Ibrance (Palbociclib)
Comments
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Thank you so many people for your responses, research, support and positivity. It means so much to me. I think part of it is that MBC is so variable, the responses, side effects, psychology etc that seeing them all here gives me a sense of ease. I do feel like I went through the worst of it with the original diagnosis and feel more sanguine this time. To paraphrase Molly Ivins, I don't think cancer cares whether I have a positive attitude, but, having one sure makes my life better.
I am on cycle 3 taking 100 mg of Ibrance and Faslodex, and besides the first few days of this cycle I feel good! (a tiny part of my brain wonders if it could be working if I feel fairly normal) I am having a scan in a week and hope it is working.
I am also doing yoga and walking daily and exercise bike a few times per week.
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Hi Nkb, good luck with your scan. Don't be surprised, though, if there's been no change yet. Ibrance and Fasiodex (I'm taking Letrozole but it would be the same, I should think) is a treatment that takes its time to start showing the results we all crave. My scan at 3 months showed that there was no regression but the good news was that there was no progression. My oncologist described my disease as stable and was happy with that as I have extensive bone mets. I'm taking 125mgm of Ibrance and I do have fatigue by the end of the cycle but apart from that I feel quite good, too so I hope that puts your mind at ease. All the best for the scan
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Re working: I have worked my entire adult life. I took about 4 months off ten years ago during my first bout with BC on disability but that's about it. I have run my own company for 15 of the past 20 years. But with this diagnosis, I have decided to stop working and focus on my health. I also want to find things to do that for me are more fulfilling - such as mentoring girls in business, or being a CASA for foster children. It's ironic - the timing of all of this - because I have personally felt a yearning to stop work most of my life, but the financial side has been an obstacle. I have been married for 26 years and have three beautiful boys - the last of whom is almost 18 years old and a senior in high school. So I am going to spend the last year he is here at home regrouping on what is important to me. I have to say I truly understand the idea that working is fulfilling for many, and without that sense of identity a person could feel overwhelmed. I may be back on this thread in 6 months saying exactly that! But at the moment after 9x radiation and starting iBrance next week I am committed to trying a simpler way of life.0
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LA894, good for you! I love it when people have the choice to do what they want. I just found out a cousin has MBC and she absolutely has to keep working to hold onto her health insurance. I'm fortunate that I'm 67 (first diagnosed at 44) and was able to retire. I pray you have a wonderful year with your son and all the Senior happenings!
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Another interesting article on the implications of the approval of the new Novartis drug and associated procedure:
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Pat G. - I am very fortunate that my husband has terrific health insurance through his work. Between that and disability insurance I am doubly blessed that I can make this choice financially. I am so fatigued already from just the radiation and as I go into the iBrance I worry that the fatigue will get even worse. So at the moment at least it's not really a choice anyway as I don't know how I would have the energy, creativity, and drive to run my business anymore.
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Hildegunn
I too am a pediatric nurse. I was dx stage 4 in April after 9 years since my original dx of stage 2, really thought I had it beat. I took 3.5 months of to recoup both physically and mentally and just recently returned to work part time, 2 twelve hr shifts a week. While I'm very tired after my shifts I'm happy to be back at work doing what I love despite long days, too many patients and the drama that goes along with nursing. It has really helped to have other things to keep my mind busy besides thinking about my cancer. I'm 52 and have been on my floor for 26years...basically my whole adult life. While I know eventually I'll have to give it up I'm going to keep showing up for as long as I can. Financially I can't leave now as well. Just had my first scan after 3 months with overall good results. Bone mets to my spine and right hip healed and the largest one I had to my left hip dramatically improved. I also had 2 spots in my liver that are completely gone!! Unfortunately 2 small new spots showed up on my left hip but my dr here and my dr at City Of Hope feel I'm on the right track and should stay on this combo. Evey Here on this site is of great support and inspiration and have brought me much comfort. I feel like I'm just now settling in to this dx and trying very hard to just move forward
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la894--I totally understand what you say. And will eventually decide to quit. But not yet. I too am fortunate that my husband has good health benefits. I also yearn for a reason to stop working but not yet. Hoping for early retirement offer from my employer.
Pedsnurse--salute. Thanks for sharing your improvements and progress. And why you continue to work. I started not tolerating my 12 hr shifts long before my dx. Glad my boss isn't willing to work with me for now. I'm only on week 3 of my treatment and so desperately needs a na at 5 pm. Every day.
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Hi! I really don't know when I shot up to stage IV, I'm thinking it was when I had my double mastectomy in August of 2015. I was originally dx'd in 2014. But onc doctor kept telling me we are going for a cure.. When he retired last fall and I got a new onc doctor, they started talking palliative care and not cure. I have been on so many chemo drugs I think I could be a pharmacist. LOL! None of them worked. Last chemo drug i was on was carboplatin, it was working but then I had a major allergy reaction to it and was pulled off of it..... I am just now completing my first week of my first cycle of Ibrance and Femara. The only side effect I have is weak legs. I had this side effect with carboplatin also.
I am concerned about the 3 shots of neupogen that I will be getting on the 18, 19, 20th of this month of september. I had such severe bone pain from neulasta, dr put me on a very powerful narcotic. It barely touched the pain. I am afraid it will happen again with the neupogen. I have some of the narcotic still with me and Onc doctor said to have it handy if the pain starts getting bad again. I was in so much pain from Neulasta I couldn't walk. I felt like my bones were going to break. I would lay in bed and cry out in pain. I just hope neupogen doesn't do that to me.
I am not sleeping tonight and it is going on 2:27 am eastern time zone. I think I better sign off and go to bed or at least try to go to sleep.
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Hi Goose14, I'm on a trial in Australia for Ibrance and Femara. I was dx in October 16 de novo with mets to the bones. I have Grade 3 neutropenia every cycle...this is my seventh cycle...and my neutrophil count rarely goes above 1.3 after a two week break. Because of the neutropenia I'm on a three weeks on, two weeks off cycle of Ibrance. Treatment is perhaps very different in Australia because I have never been told I would need shots for my white cell count. I've been told that if my neutrophil count doesn't make it to 1 after my two weeks break, my 125mgm Ibrance tablet will be changed to the 100mgm tablet. I do have some side effects such as very sore gums and weak legs and stiffness but I cope quite well.
If your neutropenia is much more severe than mine I can understand why you need shots but, if not, I'm wondering whether you can discuss the necessity with your oncologist. Forgive me if I'm overstepping the mark by making this suggestion but I'm concerned that you're so worried about the pain. Otherwise, know that support is here for you and that we care and are offering you empathy and love. Please, please let us know how you are soon, sweetie. Sending a warm hug
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Goose, why do they already know that you will need the Neupogen shots so far in advance. My onc says these shots are contraindicated for those on Ibrance/Femara. I would definitely question my onc about that. Most doctors will either decrease your dose or have you take an extra week off between cycles.
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Lynnwood1960, hi, I'm glad you reinforced my question. I also find it strange that Goose has been told she will need Neupogen at this stage. I've been on that combo for seven cycles and have Grade 3 neutropenia, as I said, and I simply have a two week break every cycle. I would definitely be questioning my oncologist about this, Goose.
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Goose~start taking Claritin everyday. It helps with inflammation of all sorts and it solves the bone pain of the shots. I take it everyday, it helps tremendously! Take it everyday starting like today, if you have to have those shots. Without that, I know what writhing pain from those shots are like. It's the only thing that helped me. Hugs ~M~
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Goose, I think it's important to speak with your Dr, and/or get a second opinion, regarding the advance proposed use of Neupogen. The Ibrance prescribing literature, supported by folks actual experience here, calls for blood tests to determine if a delay is needed in re-starting the next Ibrance cycle until acceptable WBC and ANC levels are reached or a reduction in dose if warranted. Wishing you the best of luck with your treatment
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Goose....I can't speak for Neupogen, but I did have Neulasta injections after my first diagnosis of BC in 2010. I had very little bone pain from the injections. My oncologist started me with infusion of Zometa for bone strengthening with my combination of Ibrance 125/Letrozole. I was to have the infusion every month. However, my creatinine level increased to the point where I haven't had any infusions since the first one. I don't know what's ahead for me as far as a bone strengthening drug.
Is everyone on a bone strengthening drug with this combination?
Hope
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Hope I've been on Xgeva every 4 weeks since diagnosis. My onc says it not only protects our bones but recent studies have shown that it might also have some cancer fighting effects. She says it's one of the most important parts of my treatment.
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I concur with others about questioning your doctor about the proposed use of Neupogen. There are studies showing, and women here, that lowering the dose can address the low counts issue while still providing just as effective cancer fighting power. Another option as others have said is adjusting the schedule.
I can't imagine what it would be like to be on Ibrance and Faslodex or Letrozole + those shots for the long-term.
If there is a polite way to ask, it would maybe be helpful to know how many patients your MO has on this protocol. Aside from the slowing of progression, one of the great things of Ibrance - for most, but not all - is the relatively low burden of SEs.
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hope-I'll be taking Zometa monthly starting this week. Still in the shock of my de novo dx. Have no idea what my WBC shows.
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Hilldegunn....Good luck with the Zometa. I had absolutely no side effects whatsoever. It's just the sudden increase in my creatine level that showed on my labs. I went to a nephrologist. He ran lots of labs. My creatinine level is coming down, but still a bit higher than a normal reading. The lab results showed my potassium level was low, so I'm on a 3-day dose of potassium and will have blood draw on Tuesday to check the level. Ironically, I woke up last night with leg cramps in my calf..... and that is a symptom of low potassium. I haven't had one of those for quite some time. I used to have them a lot. It's always something, it seems.
Hope
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Moderators- I like the update on Hope's post! But please consider adding a sentence "This remains one of our most active blogs, and you will find a great deal of information, hope and support here", or something like that, before you put in the general Ibrance link? My concern is that for those newcomers who have not yet figured out how these threads work, they may read Hope's note and the update, and assume that this is no longer an active thread...
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Hildegunn, if you don't mind some advise, ask for a copy of everything. Labs, scan result reports, etc. It allows you to look back and compare various things. My onc doesn't wait for me to ask, she comes in with it in her hand. You are entitled to it and they should not refuse this.
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Hi all, I am just back from a conference in New York- I met a guy who works at Syros (https://ir.syros.com/press-releases/detail/42/syro...), which is a recent pharma startup dedicated to coming up with other CDK inhibitors (Ibrance is a CDK4 and CDK6 inhibitor, but there are 19 different CDKs in humans, and couple of these look like they might be very attractive targets for cancer therapy).
As the link states, the first CDK7 inhibitor just entered clinical trials- in pre-clinical studies this CDK inhibitor works like gang-busters against triple-negative breast cancers, so could be like an Ibrance-type of drug that is specific for TNBCs.
He also said that a CDK12 inhibitor is in the pipeline, and looks (in mice) like it should work on all MBC cancers, and has a completely different mechanism of action from Ibrance. It takes a long time for companies to decide which of various versions of drugs might have the most potency for the least toxicity to take a chance on in a clinical trial, and they start at phase I dose-escalation, but I thought it was exciting that it's in the works
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Pedsnurse, that sounds like an incredibly good scan for only three months! the Ibrance-Femara combo can take a year to fully kick in, and MOs have found that they have to be careful not to give up too early- hope you have a great run!
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Goose14 - I am also curious as to how they know ahead of time, you need those shots? I too, had an extremely difficult time with Neupogen, taking it in 3 doses, instead of one does make it a lot easier. The only time I get Neupogen is when my neutrophils are below one and I am going to visit my grandkids. They are in daycare and I pick them up there, so I am exposed to everything. I also got them once before we went camping, because I was below one. Otherwise, I let my body recover naturally, and if it doesn't go up enough, I take an extra week off.
I take no bone builders at this time for other reasons, but yes they are important.
Hugs and prayers everyone
Claudia
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Cure-ious - The CDK7 inhibitor is in trials in Texas and Mass. As you say, it is for TNBC so probably not of interest to this crowd. Will repost on the liver channel.
A Phase 1 Study of SY-1365 in Adult Patients With Advanced Solid Tumors
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Lynnnwood-- most definitely will keep a long of everything. Already have my scan results and initial biopsy. Since I just started treatment I'm waiting for my first follow up next week. I do appreciate the advice. Trends are important but as a nurse I do tend to read too deeply and my onc says for me to not get carried away. He has hope but I tend to ruminates in the negative findings. That's why I joined this group. I want hope and long future.
Cureious--thank for the update. Ibrance is newer in the market and I look forward to advances in mbc treatment.
What info does any have or know about Metavivors?
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I also never took neulasta or neurogen I had to decrease my dose of Palbociclib to 100 mg and still had to wait 2 weeks for my ANC to get to 1.0. I am in my 2rd cycle of 100 mg and will see how it looks after a week off and if not 1.0 will wait another week. (my dose was decreased because even after only 2 weeks of the 125 mg I had to wait 3 weeks for my ANC to bounce back)
I am getting Zometa for my bones every 3 months now-my creatinine has been creeping up over the years-it is still normal however. I was given Zometa every 6 months for 3 years to try to prevent mets to the bones. A recent study shows it probably doesn't work.
I didn't get a copy of my first PET showing " extensive bone and bone marrow mets" because I was too afraid to read it. Maybe down the road I will, or my second one. I feel a little embarrassed to admit this, but, I feel that I have as much information as I can process right now to stay optimistic.
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Thanks, Z!! I have some work to do early next week then get to research the IO you are considering! It's going to be my treat for after getting boring work done..
Hildegunn, I read somewhere that doctors report that cancer patients with a "sanguine" personality definitely have the better outcome, and I so had to read what that meant- sanguine means being overly optimistic in the face of bad news. I would guess that might be due to the lower levels of free radicals from the stress, and maybe better sleep? You can't just wish it and make it so, but why not try being wildly optimistic about your fate, even if for no good reason?
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Thank you Cure-ious. Ramping up my efforts this coming week to get to Japan. Logistics are complicated indeed. And then there is the problem of trying to understand immunotherapy (hard) with a language barrier (harder).
In the meantime. I've been poking around looking for trials that might combine abemaciclib (which is laying down impressive results in several trials) with fulvestrant (which we know works as long as you are still responding to hormonals). If I had significant progression today, abemaciclib + fulvestrant would on my short list of treatments to switch to. Found a few trials that combine these agents.
A Study of Abemaciclib in Combination With Therapies for Breast Cancer That Has Spread
This one combines Abemaciclib with fulvestrant AND an experimental compound that is believe to inhibit both PI3K and mTor pathways.
A Study of Abemaciclib (LY2835219) in Participants With Non-Small Cell Lung Cancer or Breast Cancer
For those of you sick and tired of hormone suppression, this one combines Abemaciclib and Keytruda. Cure-ious says that's a promising line of attack. I am personally looking for the door as far as hormone suppression is concerned. The fact that abemaciclib works as a singlet therapy gives me a sense there is an exit. The fact that combining it with keytruda could be effective gives me hope I may be off this C@#p soon .
A Study of Abemaciclib (LY2835219) Plus Tamoxifen or Abemaciclib Alone in Women With Metastatic Breast Cancer (nextMONARCH 1)
This one seems to WANT women who have progressed on hormonal treatment AND chemo.
Abemaciclib should be out soon but many combinations with other drugs are still only accessible in trials. Those of you looking for a treatment now, and not whenever Abemaciclib becomes available, could find some solutions in these trials.
>Z<
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Yep! And I was just posting for Lita, there are different ones at Memorial-Sloan Kettering and UCSF for Abemacyclib with Keytruda, already in phase 2: and Abemacyclib is good for brain mets..
MSK: http://www.targetedonc.com/conference/sabcs-hers-n...
UCSF:https://clinicaltrials.gov/show/NCT02779751?link_t...
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